CAMPAIGNING & AWARENESS


Fighting for fairness


The financial cost of living with MND is already brutal. Around a fifth of carers tell us they’ve gone into debt to make ends meet.


But after the government unexpectedly demanded several families repay thousands in Carer’s Allowance overpayments last year, it made the situation impossible for many. This is money that these already struggling families simply don’t have.


One family affected by MND received a letter saying they owed £2,400, without any clear reason why. Another received a demand to repay four weeks of Carer’s Allowance, shortly after the death of their loved one.


This isn’t fair and the impact on families cannot and will not be ignored. So thanks to your support, we’ve been working to make sure the voices of these families are heard and listened to by those in power.


Earlier this year, our Chief Executive Tanya Curry gave evidence to the independent review set up to investigate the error made by the Department of Work and Pensions.


Your impact in numbers


There’s a lot to shout about in our recently published 2024 Impact Report, thanks to your support. Here’s some of our favourite stats:


At the time of writing, we’re awaiting the findings. But rest assured – whatever the outcome – we will keep fighting for fairness on your behalf.


Thank you to everyone whose support has made it possible for us to do so.


“To punish carers for making a genuine mistake, while trying to look after their loved ones in the most difficult period of their lives, is not only wrong but downright cruel. We look forward to a serious discussion about reforming a broken system.” Tanya Curry, Chief Executive


Please sign for tofersen


Let’s help more people access a life- changing treatment.


Tofersen is the first effective new MND treatment to be identified for decades. It’s been shown to slow, and in some cases, halt progression of symptoms in people living with a rare form of MND caused by a variation in the SOD1 gene.


While more than 30 patients are already accessing the drug through an early access programme (EAP), we believe 12 people are being refused access, despite having the same level of need.


That’s why we are calling on the Government to take urgent action to enable everyone who needs tofersen to access the EAP. But we need your help.


Please sign our petition asking them to intervene immediately so that nobody misses out on this vital treatment.


£10.5m £8.8m


£3.2m


78,854 pieces


1,020 cases


of income came from gifts kindly left in people’s Wills


was committed to fund 133 new research grants


of support grants were awarded to 3,148 people living with or affected by MND


of MND care information were downloaded or sent out


were handled by our Welfare Benefits Service – potentially unlocking £3.7m in benefits for people affected by MND


This is an active campaign, so please check our website and social media for the latest updates.


“It’s not right that some people who desperately need this drug can’t receive it, while others can. People with MND don’t have time to wait – it is needed now.” Tanya Curry, Chief Executive


Sign the petition here.


Read the full 2024 Impact Report here.


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